When people think of Epilepsy, they may think that it would be obvious to others around them. But one woman from Bridgend knows first hand that this is not always the case, and wants people to know the condition can be much more subtle and is more complicated than just having seizures which make her unconscious.
Becci Smart, 35, is an advocate for epilepsy awareness and was diagnosed with Juvenile Myoclonic Epilepsy with photosensitivity at 18, after a tonic-clonic seizure at work. A tonic-clonic seizure, according to the NHS is what most people think of as a typical epileptic fit.
These can happen in 2 stages – an initial "tonic" stage, where you lose consciousness, your body goes stiff, and you may fall to the floor shortly followed by a second "clonic" stage where people can lose control of their limbs. Her condition means that she is not allowed to drive, had to give up her lifelong love of swimming and has to avoid any areas with flashing lights.
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And her condition has impacted her life in unimaginable ways. While the 35-year-old has two children of her own as well as two step sons, she says she lost two other children due to the effects of a medication used to treat Epilepsy- Topamax.
But while her life is different to many people’s in a host of ways, she feels that more people need to understand that Epilepsy is not just having seizures like they do on films, as she has only ever lost consciousness once since she was diagnosed 17 years ago. “It’s so much more than just having fits,” Becci explained.
“With my symptoms, I can zone out from anything from a few seconds to a couple of minutes but it really varies. Not everyone will experience the same thing, but even a few seconds is dangerous if you are doing something like crossing a road.”
Because it is not easy to spot, Becci did not have an easy time at school as she recalls being told she was “away with the fairies.” She said: “People can sometimes think people who have this condition are lazy because you can zone out for periods of time.
“I remember teachers saying I was away with the fairies because I couldn’t engage at some points of time and it would look like I wasn’t listening. I didn’t know it back then but those moments were what we call absence seizures.”
According to the Epilepsy Foundation, absence seizures causes a short period of “blanking out” or staring into space. They are brought on by brief abnormal electrical activity in a person’s brain, similar to other types of seizures.
When she was diagnosed, this meant she had to adjust to a completely different way of life as she had to be careful about nights out, and would often have to cancel plans. Becci said: “It was hard at time watching everyone else go out and not have to worry.
“Sometimes if there was a night out planned I would arrange something else to do and invite people along to that instead but that wouldn’t always work out. It also held me back in other senses as there was a promotion I was up for at work at the time that I didn’t get. The people at my workplace were really understanding at first but eventually I lost my job because I had to have so much time off.”
Becci is not currently in paid employment, but is doing voluntary work for various organisations between studying a flexible access to a Health Diploma at Bridgend College and has recently been accepted there for their Foundation Degree in Health and Social Care Management.
Considering what might lie ahead and how she feels about her life now, Becci noted: "There will always be concerns if you have epilepsy as you go through your journey- I'm fortunate now that the seizures I deal with aren't too massive. I can recover quite quickly from them but that's not to say they're never going to start happening again or that I could start having seizures that cause me to lose consciousness.
"If I do have those seizures that can also bring about the risk for Sudden Unexplained Death in Epilepsy which plays on the back of your mind. That risk is never, ever gone- and neither is the risk that you have to change medication which can also cause loads of problems."
But in order to make the most of the abilities she does have, Becci has had to take on a positive mindset and know what she can and cannot say say to. She said: "Sometimes you just can't do things.
"It's something that has taken me a long time to learn, sometimes you just have to accept that you can't do everything. Now that I know that it does make things easier."
When Becci was first diagnosed she relied on her aunt for support as she was the only person she knew with Epilepsy, but still doesn't know anyone else in Bridgend affected by her condition. Epilepsy Action Cymru has just secured a £328,875 grant to provide a bilingual talking therapy service, which has the potential to help the 36,000 people affected by epilepsy in Wales that Becci believes this could make a huge impact.
She said: "It is really going to be a lifeline for people, just to be able to talk through their feelings and help them come to terms with the condition. And for parents, what it means for their children as not everybody in Wales has access to this already." The free wellbeing service is set to provide adults with epilepsy, as well as parents and carers of people with the condition, with free access to trained counsellors via the phone or virtually.
Becci added: "Mostly I would just want to give them a hug as it's such an isolated condition. I remember just wanting a hug from my Auntie because she was the only person I knew with epilepsy but there was no one else.
"Once you find someone that you connect with and offload on it makes it so much easier, so I'd say if you can find a network of people who can support you that understand what you're going through it can make all the difference. Reach out to people, and if you need to rebel just a little you can do... if you've had your drivers licence taking off you because you have epilepsy please don't go out and start driving.
"But if there's something you really want to do that you've been worried to try, and you can do it safely- find someone you trust and make it happen."
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